Life After Hospitalization: Helping Kids With Cancer Adjust

For a child who's been hospitalized with cancer, coming home to one's own room, own belongings, and siblings to play with — and perhaps even argue with — feels good. And for parents, there's nothing like having their child home again.

But for many families, readjusting to home life after a child's lengthy hospital stay can take some time. Parents often feel nervous about easing their child back into life at home, and kids feel anxious, too. Many wonder: "Will others treat me differently now?," "What will happen when I go back to school?," and "Will I be able to handle these changes?"

It's normal for everyone in the family to feel apprehensive about this readjustment. But with a little time and patience, most kids with cancer get back into the swing of things just fine.

Establishing Routines

First and foremost, establishing a routine is probably the most important thing you can do to help your child readjust. Kids are comforted by routines — by knowing what the day holds and what is expected of them. And a child who's been sick with cancer is no exception.

As much as possible, include your child in the activities and chores of everyday life, tailoring them to his or her abilities. Some extra TLC will be in order depending on the medical requirements, but try not to treat your child differently (or offer a different set of rules) than siblings who are not sick.

Depending on your child's age, you may also want to encourage active participation in his or her own care. Perhaps your child can change a bandage or begin to learn when to take medications. Having these sorts of responsibilities can give older kids a much-needed sense of control.

Coping With Feelings

In the beginning, your child's behavior may change. Some kids regress and act more immaturely than they used to. Others have trouble sleeping or experience separation anxiety when their parents leave the room. And they may be defiant or more demanding of parental time and attention. This goes for kids with cancer and their siblings, who are also trying to adjust to this new set of circumstances.

These new behaviors are really just ways to cope, so be reassuring yet firm in enforcing rules. Your child might acknowledge the emotions beneath these behaviors by keeping a journal or blog, drawing or painting pictures, or making a scrapbook. All of these are great ways to express difficult feelings.

Dealing With People's Questions

Early on, other kids and adults might have questions about your child's illness. Some friends will try to understand and be helpful. But not all kids are always as accepting, especially at first. They may ask questions that can seem insensitive, like "Can I catch your disease?" or "What happened to your hair?" Practice different ways of answering questions to help your child feel prepared.

And explain that talking — or not talking — about cancer is a personal choice. Some kids may want to tell everything they're going through. Others might not want to talk about it at all. Teach your child that it's OK to say, "I don't feel like talking about that right now" or to change the subject when it feels uncomfortable.

Handling Cosmetic Effects of Treatment

Cancer can sometimes change how people look, and that can be hard. If your child has lost or gained weight, try to find some clothes that fit better and make your child feel good.

Get some hats, scarves, or a wig if your child's self-conscious about hair loss. Some kids choose to not wear anything on their head, and that's fine, too. Follow your child's lead when it comes to appearance issues and what will make him or her feel most confident.

Heading Back to School

Going back to school is a huge step in your child's physical and emotional recovery. Going to school not only gives your child a purpose and the chance to have some fun, but also sends a strong message that things are returning to normal.

Once you know the anticipated return date, set up a meeting with school personnel, including teachers, the school nurse, school counselor, and principal. Tell them about your child's cancer and how it's being treated. The school nurse will need the most specific information, like what medicines your child needs during the day or if he or she will need a private place to rest.

Additional issues to discuss with school officials include:

Side effects of treatment. Some kids who've received chemotherapy or radiation may have trouble with concentration, memory, and fine motor skills, like handwriting. Contact the teachers if your child is having difficulty.

Special accommodations. Some kids with cancer need special accommodations to help them achieve in school. These can include special equipment, help with certain physical activities, more time to complete assignments, rest time, or tutoring. If needed, a customized learning plan (called an Individualized Education Plan, or IEP) can be set up at any time.

Getting your child involved. Certain activities, like contact sports, might be off limits for now, but your child can get involved in other ways, like keeping score or acting as a coach's assistant. Talk to school officials to find out how your child might still participate in activities.

When to reach you. Provide contact information and tell the school to contact you immediately if your child doesn't look or feel well, has signs of infection (especially a fever), or if a contagious illness is going around school, which can be serious in a child with cancer.

If your child is nervous about going back to school or isn't yet up to a full-time schedule, consider an initial schedule of a couple of days a week or just for half days. For added moral support, see if a friend can walk into class with your child on that first day back. And make sure your child knows to let someone know immediately if he or she isn't feeling well or is having any problems.

If your child is worried about the questions people might ask about the cancer, before it's time to return to school ask if a school nurse or a nurse from the care team can talk to the class about your child's condition.

What to Watch For

Of course, no matter how much you prepare, the readjustment to home and school life can still be tough. So keep an eye on how your child copes.

A child who starts to find excuses for not going to school may be struggling. In that case, school officials can be your strongest allies in the back-to-school transition, so stay in touch with teachers, the school counselor, and the nurse to see how things are going.

Check in with siblings' schools, too, to see how they're handling the changes. If anyone in your family (including you) has trouble adjusting, consider talking to a counselor or joining a support group to work out difficult feelings.

Adapting to any new situation takes time and bumps in the road are to be expected. But things will get easier — and a more normal routine is likely just around the bend.